Tuesday, August 12, 2014

XMRV also retracted for Prostate Cancer


Retraction Watch

Authors retract highly cited XMRV-prostate cancer link paper from PNAS
Written by Ivan Oransky
August 12, 2014 at 8:33 am

Retraction Watch readers may recall that nearly two years ago, an
editor at PLOS declared the scientific story of a link between XMRV,
aka xenotropic murine leukemia-related virus, and prostate cancer
over, saying that a retraction from PLOS Pathogens was the "final
chapter." (That retraction led to an apology from the journal about
how it was handled.)

Perhaps, however, there is an epilogue. This week, a group of authors
who published a highly cited 2009 study in the Proceedings of the
National Academy of Sciences (PNAS) making the same link retracted it.
Here's the notice, signed by all five authors:

"Retraction for "XMRV is present in malignant prostatic epithelium and
is associated with prostate cancer, especially high-grade tumors," by
Robert Schlaberg, Daniel J. Choe, Kristy R. Brown, Harshwardhan M.
Thaker, and Ila R. Singh, which appeared in issue 38, September 22,
2009, of Proc Natl Acad Sci USA (106:16351–16356; first published
September 8, 2009; 10.1073/pnas.0906922106).

The authors wish to note, "Due to work performed in other labs, we now
know that some conclusions from our paper on xenotropic murine
leukemia virus-related virus (XMRV) cannot be true. However, other
findings that we reported in that paper still remain valid.

"XMRV was first described in 2006 as a new retrovirus detected in
prostate cancer tissues (1). We replicated this finding, identifying
XMRV sequences by PCR from an independent set of prostate cancer
samples. Other groups also detected XMRV sequences in prostate cancers
by PCR (2, 3). However, subsequent studies showed that XMRV was in
fact generated by the recombination of two endogenous murine
retroviruses when a prostate cancer was passaged in nude mice to
generate the 22Rv1 cell line (4). The detection of XMRV DNA in various
human tissues by PCR has been attributed to contamination of
commercially available reagents with mouse DNA (5).This explanation is
the most likely for the PCR findings we reported.

"The immunohistochemical staining with anti-XMRV antiserum that we
reported in our PNAS publication was most likely due to
cross-reactivity of our antiserum with a protein present almost
exclusively in malignant prostatic epithelial cells. We are in the
process of identifying this cross-reactive protein.

"We wish to note that other parts of our paper remain valid. We
created a full-length infectious clone that replicated efficiently in
a human prostate cancer cell line. We used transmission electron
microscopy to analyze the XMRV particles produced and showed that
their morphology was identical to type-C retroviruses. Using gel
electrophoresis and Western blotting, we determined the molecular
weights of all the structural and nonstructural proteins of XMRV. Such
detailed characterization of a xenotropic virus, including electron
microscopy, has not, to our knowledge, been performed elsewhere. This
characterization still remains correct and is relevant to the
understanding of other wildtype xenotropic viruses.

"Taking all of this information together, we would like to retract our
paper; specifically, the findings reported in Figs. 2–4 and Fig. S1
are no longer valid and we no longer believe that XMRV is associated
with prostate cancer.""

The paper has been cited 199 times, according to Thomson Scientific's
Web of Knowledge. The first reference in the retraction is to the
retracted 2012 PLOS Pathogens study.

A Science paper claiming a link between XMRV and chronic fatigue
syndrome (CFS) was retracted in 2011.

The Loneliness of Illness and Pain - Invisible Disabilities Association

"A huge part of illness is isolation. Oftentimes the overwhelming nature of chronic illness and pain drives even friends and family members away. This isolation turns into loneliness."
* * *
Even the very first time that I asked friends for help, they said No.  This was not, as some have argued, that I was soooo needy that I burned them out, but that they didn't even want to help the first time.
My friends were active people -- sitting around my living room chatting with a sick person didn't appeal to them as much as hiking, running, jet-skiing...  so they didn't do it.  Not even once.  I didn't need the rejection, I stopped calling and begging for a few minutes of their time.
In short order, my social life was limited to my mother calling once in a while, an emotionally needy friend calling to dump her problems on me so she wouldn't have to pay her shrink (which drained me even more, but I hated to discourage her from calling because at least it was someone to talk to), and whoever I could chat with on the internet.

Sunday, August 10, 2014

Where Fibromyalgia and Chronic Fatigue Syndrome Part Ways (and Where They Don't)


Reduced levels of BDNF – described as a nerve repair agent – were recently found in Chronic Fatigue Syndrome and multiple sclerosis.  The levels found – less 25% of normal – were stunningly low, and this suggested that neuron functioning was taking a real hit in both these disorders.  Given the nerve damage found in MS, that result was expected for MS – but not in ME/CFS.

A recent Fibromyalgia BDNF study seems to portray a very different disorder.



Saturday, August 9, 2014

Breaking news!! Congratulations to Simmaron's Scientific Director - Isabel Barao

Breaking news!! Congratulations to Simmaron's Scientific Director - Isabel Barao, PhD - who won a $75,000 NIH grant to further her work on immune abnormalities in ME/CFS! We all know how important more NIH funding of ME/CFS is, and Simmaron is making progress! The grant only supports 20% of Dr. Barao's salary, so we need your help to continue funding her work on immune cell studies and more grant submissions. A blog by Cort Johnson describing this award is coming soon! Stayed tuned...


Thursday, August 7, 2014

Friedberg: "Overstating recovery rates"

http://bit.ly/1ou12wM  i.e.

Fred Friedberg Warns Against Overstating Recovery Results in Studies
of Chronic Fatigue Syndrome

July 22, 2014 – Commenting on a recently published report of a
large-scale evaluation of behavioral interventions for chronic fatigue
syndrome (CFS), Fred Friedberg, PhD and Jenna Adamowicz warned against
overstating the capacity of any currently available therapy to produce
recovery from CFS.

In January 2013, the journal Psychological Medicine published an
article in which Peter White reported a recovery rate of 22% to 23%
from CFS after treatments given in the PACE trial, a large scale
five-year study in England and Scotland which compared the
effectiveness of various forms of behavioral treatment for CFS. Dr.
White and his colleagues reported that the trial demonstrated that
"cognitive behavior therapy and graded exercise therapy were more
effective treatments for chronic fatigue syndrome than specialist
medical care (SMC) alone, when each was added to SMC."

In their commentary, Dr. Friedberg and Ms. Adamowicz pointed out that
because the term "recovery" was used to refer only to recovery from
the current episode, the outcomes would more accurately be described
in terms of remission rather than recovery. They noted too that the
definition of recovery used in the report does not include the
subjects' perceptions of their health status, particularly if they
view themselves as recovered.

They concluded that because a recovery rate below 25% still leaves the majority of patients with significant symptoms and impairments, "the publicity generated by trumpeting recovery outcomes in CFS far exceeds the relatively modest results found for most patients in behavioral treatment research."

Dr. Friedberg is an Associate Professor and Ms. Adamowicz is a Senior
Research Analyst in the Department of Psychiatry at Stony Brook
University. Their commentary, titled "Reports of recovery in chronic
fatigue syndrome may present less than meets the eye," was published
in the August 2014 issue of Evidence Based Mental Health. It was first
published on line on May 21, 2014. The recovery data from the PACE
trial were reported in an article by Peter D. White, et al. published
in the October 13 edition ofPsychological Medicine under the title
"Recovery from chronic fatigue syndrome after treatments given in the
PACE trial."

* * *
I'll agree that "remission" is a better word than "recovery" -- even when I had "recovered" enough to return to work full-time, I still had periodic relapses.

Tuesday, July 29, 2014


BLACK DRESS DAY! The 8th August is Sophia Mirza's birth date. This year would have been Sophia's 40th birthday. Sophia died from severe Myalgic Encephalomyelitis at the age of 32 as a result of medical abuse and ignorance. Sadly no lessons have been learned since her tragic death.

Sunday, July 20, 2014

Celebs Suffer From Illnesses Too | PressRoomVIP

Lyme, fibro, ME/CFS, and more!

Why I'm feeling so crabby about cancer conspiracy theories | Cath Ennis

"...ranted about how "all you scientists are sitting on a 100% effective cure for cancer" ("a bunch of vitamins smushed together with proteins" were his exact words), watching millions of people die as we counted the royalty money from the "useless poisons" we were forcing people to take."
"There is no "cure" – just incrementally earlier detection, more effective treatments, and – in some cases, such as the HPV vaccine – better prevention."
"More importantly, if we really were sitting on a secret cure, no one in this field or any of our loved ones would ever die from cancer"
* * *
As I've said all along -- Big Pharma might be able to buy off the doctors, but not the patients.  If you were cured by drinking bat guano tea or standing on your head for half an hour a day while wagging your left foot, wouldn't you be all over the internet telling your fellow patients to stop wasting money on doctors?
Especially in CFS research, some of our medical experts have CFS themselves.  If herbs or vitamins were a cure, don't you think they'd cure themselves so they'd have more energy to devote to their patients????
I am not big on conspiracy theories, though I will admit that "the government's refusal to acknowledge CFS is because it's a bioweapon experiment gone wrong, for which they don't want to pay reparations to patients" is one that sounds plausible. 
But Dr. Bell has said in his newsletter that if a cure is found, it's going on his website so patients can avail themselves of it, and I've said much the same thing -- if I hear about a cure, it's going on my blog, in all my online groups, and in private e-mails/phone calls to other patients.  Remember that once it's posted on the internet, it can never disappear entirely.  Even if CDC had the power to remove my blog post and group postings, they can't make the people I've communicated with privately forget what they were told.  And they will tell their friends, who will tell their friends, and eventually word will travel to every major city's CFS support group.

And so it would be if they truly had a cure for cancer -- the patients would be bragging "I was cured by eating SomeWeirdStuff" to anyone who would listen.  The government couldn't keep the patients quiet.  Even if the government threatened them to say nothing, there will always ALWAYS be someone like me who doesn't give a hoot about threats and will shoot off my mouth regardless.